So much focus is given to the different symptoms of macular disease and how it affects one’s vision, but less on how a diagnosis of a chronic retinal condition affects one’s emotions and emotional well being. The day one is diagnosed with AMD or any chronic eye condition is a day that is not forgotten. Suddenly that person’s world has changed and his/her future becomes uncertain. One’s identity and role in life and in one’s family all comes into question. Can I continue to work, drive, cook or travel are common concerns. So it is refreshing to hear that some low vision services like The Chicago Lighthouse in Chicago, IL offers a comprehensive approach to patients including, “assessing and treating the commonly found emotional components of vision loss as part of comprehensive treatment.”

Initial Diagnosis

Many readers of www.WebRN-MacularDegeneration.com/ have shared their story and journey with AMD.

Very few doctor’s offices take the time to address the questions, prognosis and future concerns of the patient and family member. Often no referral to low vision services or rehab is offered and a patient is left alone to figure out what their eye disease really means for them. Some of the emotions and statements shared by patients when initially diagnosed with a macular disease are:

• I am scared
• I am tense
• I am in a frenzy
• I spent the first year terrified
• I worry

Adjustment and Adaptation

It is those who take action by becoming educated through books, websites, conferences, support groups, etc who find more answers and hope for their future. Here are statements shared by others who have gotten second and third opinions, researched the internet, read books, joined support groups and have become educated on their eye condition:

• I was able to get through the depression and fear much more quickly and in a more positive way.
• There is every hope that you can maintain your vision, maybe even improve it.
• I am very encouraged at this time and refuse to sit in a chair waiting to go blind. Affirmative, positive action is needed especially as we age.

One of the first low vision programs to offer psychological support is the Bergman Institute for Psychological Support at the Chicago Lighthouse in Chicago, Illinois. Their focus “is the emotional and psychosocial components of vision loss and their impact on the person’s ability to engage in rehabilitation and adjustment efforts.” Not only do they offer individual therapy, but family therapy as well. It may not be practical for you to take advantage of this service, but you can learn from others with AMD by reading about their experiences and journeys here:

Stories From Those With Macular Degeneration

Leslie Degner, RN, BSN

www.WebRN-MacularDegeneration.com/